Carers Allowance should be increased

[Noras]

Recent events on Mumsnet has made me even more upset about continuing to be a carer for my adult son. There are many carers out there doing the job voluntarily. Their kids are adult and there is no duty of care owned by adults. Moreover there is no asset against which the state can claim against for social care. The decision to care for our off spring is a fervent belief this is best for the time being.

Whilst my son lives at home I get £81 carers allowance a week. If my son lived in supported living I would

Be able to charge £15 per hour carers rate (including holiday and pension).

Be free to choose my hours and never have to worry about cover to go out - that is the States duty of care

Can opt never to have to complete a pip form or universal credit form again - leave it to another carer!

So the push is for me to want my son either on social housing or supported living

Caring duties include

Sourcing and recruiting PA / interview / draft advert and check applicants etc

Send out contracts to PA’s

Chase and send in timesheets

Train PA on how to deal with DS

Draft comments and arrange attendance at EHCP reviews. Chase updated EHCP and check it for amendments and liaise with council etc

Apply for transport for college - if needs be advocate. Liaise college and transport and taxi driver for changes of which there are many
Weekly exchanges of chase up and changes

apply for Pip - complete lengthy form. Be available for interview and conduct interview - DS clearly can’t

Universal credit - apply - argue legal points if necessary - administer funds - set up bank account for DS and administer it via a monintjon or poa

Care

Take for hairdressing appointments
Cut finger and toe nails
Hold tissue and encourage to blow nose as required
prompt shaving and if needs be husband shaves him
grapple with him and insist clothes are changed
laundry
take to dentist and keep eye on teeth cleaning
laundry
clear blocked toilet
prompt meds when constipated or asthmatic and hands on care with cold as he can’t blow nose

Supervision

Stop overeating and monitor diet
Stop crazy eating eg microwaved salad or eating microwaved tuna and sweetcorn at midnight
check his desire to experiment in kitchen
discuss and practice food cookery and what he will do at residential
Ensure healthy diet because that would not otherwise occur
Stop him cutting bread rolls whilst in hand
shopping/ clothing

do all clothes shopping
check wardrobe periodically to ensure shoes js clothes all fit still - he cannot seem to vocalise that need well

Toileting

Be on hand to unblock toilet and clean mess

Activities

Organise all his activities to encourage socialisation eg disabled group or drama group - this includes research for holiday activities

Get debrief form Pa re activity

Liaise with social groups eg one council one needs to know if taxi required weekly etc

Receive feedback form groups re how he is doing/ accessing community

Help with social disabled group so organise an event or two ( to make these things happen)

Take to the gym to swimming to maintain health - this involves micromanagement in say swimming pool

Take out on bus to train and persevere with this
Make him experience busy bus times

Train how to do shopping and wait for change

math skills - ongoing - mental maths an issue due to lack of working memory on 2 and 4 percentile - yet he can do algebra and has a gcse!

Try to train to use Apple Watch as he won’t wear a tracker ( we bought it for him with our own money!)

training - social interaction eg on dog walk or in shops etc

Also keep up to date on all learning activity opportunities and be excellent welfare / eduction lawyers advocates

Finally be there every evening and night due to his anxieties and vulnerabilities unless relieved by PA or activities so I CAN HAVE A GLASS OF WINE

Pay rate £81 per week

as opposed to several hundred for fewer hours work and shared load in supported living / social housing

Just to update, I have had zero response from my local MP asking that he looked into Carer's Allowance and the petition to increase the payment to 35 hrs @ 50% of NMW.

I am not in the least surprised, he's one of the highest 'sideline' earning MPs, has a vast geographical constituency with his most deprived town (even by national standards) far removed from any of his life-experiences.

He only involves himself in the big, photo-worthy stuff, booms his voice occasionally in Parliament, and despite his importance and comfortable life-trappings seems to have no inclination to shift his ass out of his comfortable seat and let some new blood/candidates have a go; they might actually give a shit too.

not surprised. I wrote to my Labour MP recently too. just got some general bollocks back how labour values carers but there was nothing specific. Nothing will get better or change. I currently care for 2 people and manage a part time jobs which takes me above the earnings limit. Result - I am still piss poor as o cannot earn enough to make a living but I get also zero recognition of the 60-70h of care I provide on top. I don't get a break, no help from social services, no respite. I recently had a major breakdown because of the sustained stress (ambulance called). Loads of help promised as agreed by GP and social services that it isn't sustainable but nothing has materialised. Back to square one and waiting for the next crisis. It's not gonna get better under Labour.

Judging by some of the stories I've been reading on MN and from other sources, I think the scale of problems in terms of any caring issues, whether to do with CA or issues with SS and HCPs and the attitudes from the NHS in general, is way beyond what we imagine.

Until you're in it, and experience the shambles that it is first hand, I suppose it's natural to imagine that some people are just unlucky or perhaps misunderstand things or are somehow complicit in the shitshow. However, that is not what I'm seeing at all in the stories related by exhausted, terrified and utterly depressed people trying to make sure people who need often complex levels if care are safeguarded and treated with a bit of dignity and respect at their most vulnerable.

If there are this many people trying to be heard, and basically being fobbed off and dismissed at every turn, how many more are there who haven't shared their stories who are just being ground down and swallowed by hopelessness because every plea has fallen on deaf ears?

In tandem with the zeitgeist on other threads, I'm really concerned about the creep of dehumanisation and hints of solutions with economic drivers at the forefront. The implication that we should all just detach from our emotions, put aside compassion and accept that the elderly, sick and disabled (especially if poor) should just quietly vanish by whatever means to protect the public purse.

To all carers and their charges - love and solidarity. I don't know what the answer is, but I'm increasingly alarmed by it all.